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Dear Kelly,
Thank you for succinctly sharing your concerns about communication at this event. I am very glad I am not alone in speaking out.
~Regina Holliday
I could tell by your tweets that you were becoming more and more concerned about communications. Your own are eloquent and do not need a spyglass to decipher. That kind of issue is just another layer in the maze.
Annette
Yes.
It is more about culture than it is about a specific decision or agenda. Had there been a comment time following the board & executives session yesterday at the #PCORI meeting, I was going to speak about culture. How a culture of authentic collaboration can replace the (mostly unspoken) fears many of us still experience about whether PCORI is a wise investment of our energy.
We believe that embracing consumers/patients (can we just call them people?) at the center of the health research enterprise is the only way for it to be sustainable. It’s not include patients AND do good science. It’s patients at every step SO THAT we do good science.
My brief remarks when the U.S. Presidential Commission on Bioethics invited me to speak on the subject (consumer participation in health research) was my attempt to overview this needed sea change to a very serious audience (so it contains a little less levity and emotion than is my natural presentation personality):
http://j.mp/PresBioethics
Thank you for recording your insights, Kelly. So far it appears that PCORI needs and wants our help. Though I think the leadership might not yet grasp the powerful position they occupy to help cultivate a new culture for the entire future of health research.
Hi Kelly
Great post, thank you for the thought leadership around contributing to the development of a patient-centred culture at PCORI.
Just to offer a correction: the excellent article you link to against my name was actually penned by Trevor Young (@TrevorYoung) whom the piece refers to as ‘a.k.a. blogger the PR Warrior’ — that’s something else you have in common, then! 🙂
Kind regards
Andrew
Kelly, thank you for your presence at the PCORI meeting and for recognizing and voicing patient/advocate conderns. I visited the DC PCORI offices on 2/6/12 to punctuate my willingness to be an engaged patient participant in research on failed implanted medical devices. My early application to participate in the 10/27-28,2012 meeting was met with rejection, so I joined the webinar and Twitter. My question about who was representing the harmed patient with implanted medical devices was met with silence from @PCORI. Joint replacements (orthopedic implants) are the #1 expenditure of Medicare and the IOM on 7/29/11 stated that the FDA 510(k) process does not assure patients that implants are safe and effective. PCORI could follow UDI of implanted devices chronologically and inform patients of devices that are most effective and do not require revision or cause adverse events. This would reduce patient harm. I understand that Joe Selby(PCORI ED) and Jeff Shuruen (FDA director) have had conversations about this. I want to know who is a responsive representative of the harmed patient stakeholder in these discussions. PCORI will not succeed by ignoring engaged patient activists. We do not have the option of quitting!
Jolene, I appreciate your concern for failed implanted medical devices. I know we have enough concern in our own field of rheumatic diseases, however, by way of comparison-I am aware that there are thousands of cochlear implants that are implanted electronic devices to provide a sensation of hearing, that fail. The FDA has a reporting system for failed devices and a process for recalls, however, the risks of failure is often not explained to people considering the device. Nor have I read any requirements by the FDA to disclose this information to patients. Often, the companies that manufacture the devices are instructed about claims they can make about the approved and intended purpose of the device and how to safety use the device. You have touched on a very important issue for those with rheumatic diseases.
Hi Kelly. Thanks for this important information about PCORI. I’ll look forward to reading your next blog on the topic.
What can we, as patients, do ????
Reply to Joleen re: joint replacements data:
Several countries have joint replacement registries that collect timely data about joint replacement devices, surgical procedures and other outcome related data – some countries have had these registries for decades. It was the UK’s national joint replacement registry that became aware of the failure rate of metal on metal hip replants and brought it to the public’s attention, which led to the recall of these devices. In Sweden, data from their national joint replacement registry (created in 1979) has resulted in better outcomes, with a failure rate a third of the US.
http://www.nytimes.com/2010/07/03/health/03patient.html?_r=0
Not until 2009, did steps began in the US, to establish an American Joint Replacement Registry. With the data collected from a national registry, not only will patients safety and outcome improve, but over the years potentially save billions of dollars in health care spending.
http://www.eurekalert.org/pub_releases/2009-07/aaoo-ajr072309.php
Hi Kelly,
I read all your postings. I have had RA for 19 yrs. I sent you an email along w/photos of my feet I thought might be of use to your cause. I didn’t get any email back so was just cking in to see if you rec’d it.
Keep up your good work !
Let me know if you got my email.
Sincerely,
Kathy Parker
Kathy, I loved your email & I was just re-reading it this morning! Thank you so much for what you sent!
I’m so sorry I haven’t replied yet with travelling and preparing for ACR I’m probably more behind than usual. Having no computer for 6 weeks made it even harder. I get hundreds of emails and often get months or weeks behind.
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